gone but not forgotten
- Sep 30, 2011 8:41 pm
(#1 Total: 21)
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kate you just have to take the good with the bad things will always nag at you at times you will have good days and bad but try looking at those days as a good memory instead of negative. life is worth celebrating. had you not been in the hospital and him in nicu either you or him may not be hear you did what had to be done and it isn't ideal but its the best you could do and that little trouper is a miracle baby named after I am assuming a great man. he deserves all your joy and happiness despite what happened on his arrival and you deserve the joy and happiness of celebrating the life that was almost lost not only his but yours as well. life is what you make of it so try to stay positive and know you are not alone 
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Mary X
- Sep 30, 2011 10:37 pm
(#2 Total: 21)
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I completely understand what you are going through. I feel as though I'm suffering from PTSD and I feel like I can't move past it nor let go of it. I feel as though I'm changed person. Although I go to work and do my usual routine with my family and friends, I'm not the same person. I feel as though only you ladies understand what I'm going through. You all have been my rock and I cannot thank each and every one of you enough for helping me. From the bottom of my heart, THANK YOU!!!!
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liz loschinskey
- Oct 1, 2011 1:04 am
(#3 Total: 21)
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Hi Kate. I understand completely. I understand both sides. Everything you mentioned with my daughter. I remember when my son was born and passed a week later, I remember crying to my sister "All I have to show for my son is an extra 20 pounds and this scar on my stomach". I can slightly laugh at that statement, now, but it's true none the less. Each day is a new day! I may have lost all of those things with my daughter, but we are extremely blessed to have a healthy, happy daughter! I remember planning her 1st birthday....it wasn't a birthday celebration to me....it was a Thank you Jesus! party for how far she has come so far. SHE'S ALIVE!party. I cried alot that day. We just had her 2nd birthday party last week. This party's theme...Elmo. Ha!
Love and light,
Liz
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Jackie G
- Oct 1, 2011 2:04 am
(#4 Total: 21)
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Mom to a 25 weeker who is now 8 years old and a 38.5 weeker who is now 6 |
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That first birthday is always a roller coaster of emotions. I remember going through the same things you are going through. I have so many regrets and so many things I wished I could have changed - but I can't. So I put it in perspective and move along. You know what I did get? An extra 3 months to watch my daughter grow. An extra bit of excitement as she passed each milestone. A feeling that I am so very lucky to have her with me and a knowledge that I won't take her for granted.
So while some things will bring you down, focus on those things that lift you up. Those are the things to remember.
Hugs,
Jackie
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Angel Love
- Oct 1, 2011 5:00 pm
(#5 Total: 21)
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It's hard to accept the things that happen when your children are so early. I miss many of the same things that you mentioned..... It's all so crazy! In the big picture, yes, we're thankful for the gift that we hold in our arms, but I feel it's okay to mourn what we didn't get. Hugs to you!
Tracy 
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HOLLYK108
- Oct 3, 2011 4:10 pm
(#6 Total: 21)
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I get what you mean about PTSD. I feel so traumatized by the shock, anger, and regret, that I felt at the whole NICU thing I seem unable to move beyond it too. Does anyone else feel as though they don't get much support from your spouse or family? I am constantly being silenced by my family when I ask for help. Told to "let it go" or "he's here, stop whining". I don't think they get it. They were not in that NICU everyday and all night long... not even my husband was there that much. I feel like this is the only place where people get it! thanks so much
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liz loschinskey
- Oct 3, 2011 7:55 pm
(#7 Total: 21)
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Kate, I get it. It was by my husband's family who would tell me literally..."Get over it." Get over it? I'll get over it while I punch you in your teeth. I would never punch anyone, but that's what I thought. His side of the family has told me that about my deceased son more times than I can count on my left hand. His family does that with Tori as well. Yea, she's here, alive, healthy but nearly 4 months of my life, every single day were spent at the hospital. My husband went back to work. It was Tori and I. constant worry that my child was going to die, I would literally break out in hives every single day. Huge itchy welts...size of quarters. It continued like that for the next 9 months. I'm lucky if family came once a week after the first few weeks. He and his family would tell me, just calm down, chill out, Breeeaath. Dude, if I could calm down or chill out don't you think I would? Do you think I like being like this? People wonder why I am so overly protective of my kid. Wonder why she doesn't do sleep overs, She doesn't do vacations without me, or why I hold this child so dear to me.
People don't get it. We get it.
The bad part is, 2 years later, I am still so angry about it. Angry for them not understanding, Angry for them literally saying "Get over it". I've lost respect for alot of people. Don't let your anger get in the way of forgiveness. I did, and it's not worth my energy, yet I still feel the same. Angry.
Love and light,
Liz
[Last Editor: liz loschinskey, Oct 3, 2011 9:13 pm. Total Edits: 1]
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NathansMom13
- Oct 3, 2011 11:01 pm
(#8 Total: 21)
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Come to ShareUnion 2012: It's the BEST weekend ever!!! |
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First birthday's are a huge rollercoaster of emotions. You can look back and see how far you have all come but you also look back and think of all the things you never got to do. I still have a hard time on my son's birthday and he will be 4 this year. I have learned to live with all the things that bothered me though, like everyone else seeing him before I did and not getting to hold him right after he was born.
Laura
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HOLLYK108
- Oct 5, 2011 2:33 pm
(#9 Total: 21)
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Liz,
I totally know what you mean. I was there all day and all night with my son, most days. It was so hard to watch as he had a brady or SVT and to be the only family member there for your child.
One time I called my husband at work and told him to come back for a chest x-ray cuz I didn't want to be alone. The neonatologist had said to me this result could mean heart surgery. I was so scared. While I was waiting for my husband the tech came and he did the x-ray anyway. I had to hold my baby down for him. He was flipped and cried and cried those little micro-Preemie kitten noises. Then when my husband arrived he actually said. "You know, they are going to do all kinds of these tests. I can't keep running over here for all of them." I never called him again. I was really alone. Even the father of my child didn't quite understand what it felt like to sit and watch. Helpless. How does one "get over" that?
How can your family expect the same from you with your son's death and your girl's long NICU stay? I sometimes feel like people devalue the situation because they were newborns. If my baby was in the hospital for that many days as a toddler would people treat me differently? Would they be more understanding? I don't know. I would hope so! But why is the trauma less "important" because he was new to the family?
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Jackie G
- Oct 8, 2011 1:25 pm
(#10 Total: 21)
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Mom to a 25 weeker who is now 8 years old and a 38.5 weeker who is now 6 |
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Kate - I don't know that the trauma is less, it's just harder to understand for most people. They haven't had time to make a connection with your child so it's not easy for them to picture what is going on. Doesn't make it right, but I think it does make it "different".
Hugs,
Jackie
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esgf
- Oct 9, 2011 12:52 pm
(#11 Total: 21)
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Abigail's Mom (29 weeks, 3/21/05) |
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I think Jackie is right. It is harder for many people because most have never seen your child, let alone held (you may not have even done that), loved or watched your child struggle so it is hard to know what to say. Also everyone grives and mourns differently. As NICU parents or those who have lost their little ones there are so many things to mourn, the loss of normalcy, normal pregnancy, the joy of bringing them home w/o aid etc and one cannot be expected to work through that all at once.
Take care,
Ellen
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lomitachicken
- Oct 12, 2011 5:57 pm
(#12 Total: 21)
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mom to Seth a 23 week miracle! and Shelby F/T |
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December will mark my preemie's 12th birthday....and with every birthday the same memories and feelings come flooding back as well. And it's ok, it's normal. We will always morn the loss of our pregnancy and the traumatic welcoming of our too small and too early babies. But when you see your miracle having their first birthday, even though it wasn't "supposed" to be their birthday yet, take a moment to enjoy the look on your child's face and remeber how incredibly blessed we are to have such a miracle
Jenn
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HOLLYK108
- Oct 19, 2011 2:31 pm
(#13 Total: 21)
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Jenn,
Your 23-weeker is 12?! That really is miraculous!
The first birthday went ok. I cried a little when my son woke up that morning. Then it was so busy getting ready for his little party that I was not really able to dwell too much. Which is really good! Kind of a cool side note the NICU reunion for all the NICU grads of his hospital was the morning of his birthday. I got to have his picture taken that morning with his nurses and the doc who treated him at birth. He loved it because he's obsessed with dogs and got to play with the doggie therapy dogs who made a guest apprence It was kind of crazy and awesome to see those ppl and even the dogs again. Knowing they are still out there doing what they do, saving babies and healing families.
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stacyat
- Oct 19, 2011 6:31 pm
(#14 Total: 21)
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Mom to Emilyn and Hailey (our 20 week angels) and Elim (our 38 week, full term miracle)! |
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Aww, that sounds like a beautiful birthday celebration for your sweet guy!! I love that you were able to see all his nurses and doctors a year after his birth! Hugs!
Stacy
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Ally_Alex_Alivia's_mom
- Oct 24, 2011 1:26 am
(#15 Total: 21)
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Hollyk108- Hope the birthday went great. I can tell you from experience, 7 years later, I still think about and miss the things that I didn't get to do with my daughter like holding or seeing her for the first two days of her life and leaving the hospital with out her. I did really well leaving the hospital, it was when my husband and I got to the hotel that we were going to stay at (because the hospital that our daughter was in was so far from our home) that I really broke down. I can remember him telling me that I just needed to go take a nap because I was exhausted and he went to go get groceries. I think I laid in bed and cried the whole time he was gone. I can chuckle at this now (and often tease him that I just need to go take a nap), because I know that after not leaving my side for 5 days, he was the one that needed the break. At the time though he didn't even get how I felt or why it absolutely tore me apart to leave her. I think you have to be a mom and have been in this situation to fully understand how you feel and that you never really get over it, rather you find a way to cope and have peace with in yourself. I will always miss those things that I didn't have the chance to do, but thank God everyday that I have my little girl and that I got to experience some of those things with my other children.
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Evan0409
- Dec 2, 2011 7:57 pm
(#16 Total: 21)
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Hello, Oh boy do I understand your feeling. My son was 10 weeks early. Thank God he has done so well, but those months after he was born was really hard. I wanted to get pregnant again so I could go through the whole process that I felt I missed out on. Approaching his 1st birthday was so difficult - re-living what we went through. I had such a hard time the day before and the day of, but I was SOOO very thankful that he was with us and had gotten passed all the large hurdles that he had get over in his first few months. I think as time goes on each birthday gets easier. I didn't feel the same on his 2nd birthday. I just enjoyed my boys special day and said some silent prayers.
Going through what you went through is very hard for anyone to understand unless they have gone through it also. I had some really unkind comments sent my way throughout our whole ordeal and had to be so strong in the NICU when I was the only one there with my son during his difficult days. I feel that is just what a true Mother does. That is why we are who we are. Enjoy your babies 1st birthday and try and think of all the positives. They grow up fast!!!
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wilsonlynn9
- Jan 5, 2012 4:07 pm
(#17 Total: 21)
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Good morning! I went through the exact same feelings that you are describing; my baby was born at 27 weeks and was in the NICU for 5 months and had 8 surgeries. She came home with a trach and a g tube in December of 2009. Today she is a normal, trach and g tube free and has the vocabulary of a 3 to 4 year old! I look at her and the light that she exudes and decided that the journey to get her to me is over; now I live and appreciate each day for what it is without looking to the past and what I missed out on. Live in the now....that is the best advice that I can give to you...I feel your pain but being in the now is the fastest way to true hapiness! xoxo to you and your amazing baby!
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tucker'smom
- Jan 5, 2012 6:34 pm
(#18 Total: 21)
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Mom to Tucker (27 weeker, 05/26/06) |
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Hello wilsonlynn9, My son Tucker is 5, he also had a trach until he was 4, and he still has his g-button. I agree, it is amazing to look at where they were at birth and to see how far they have come. I also had all of the same positive and negative emotions surrounding Tucker's first birthday; in fact, every birthday is very emotional, but they get much more joyous as time goes on. Facing your preemie's birthday forces you to almost relive the birth, and really think about details that you put aside for the rest of the year. It's also a time to think about where your child could have been at this age, but for the premature birth. It's totally normal to acknowledge these feelings and try to work through them, while at the same time being so excited and proud that your little one made it through his or her first year Hugs,
Leigh
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HOLLYK108
- Jan 8, 2012 5:43 am
(#19 Total: 21)
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It seems I got thru the birthday better than today. My son was supposed to be a December baby, but he wasn't. Of course, to rub some salt in my wounds my husband has a cousin who has had a baby this past December full term and right about at my original due date. They had the baby shower for that baby tonight. My son was not at his. He was at home as he couldn't be around people for eight months after he was born, rsv risk. Going to that baby shower just reminds me of everything I missed out on again. I know someday. Decemeber 17 will pass I won't connect it so heavily with my son. His actual birthday will be the day. That time just isn't now. Sadly enough. To top it all off on Dec 15 of this yr. I had a very early very unexpected miscarriage. Just another thing to stress about I guess. Thanks to everyone who has posted on here. I am glad to see so many people have the same feelings, that I am not a selfish freak for not being just happy with what I have. That my feelings are normal. To the two moms above me. I hope your children are healthy enough to see those g-tubes gone soon enough. Much love and prayers. You have endured and come thru so much more than I can even imagine!
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stacyat
- Jan 8, 2012 7:28 pm
(#20 Total: 21)
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Mom to Emilyn and Hailey (our 20 week angels) and Elim (our 38 week, full term miracle)! |
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Huge hugs, I'm sorry for the things that you missed out on with your little guy because he was born early, and for the little one you lost so close to what your son's birthday should have been. I think the things you are feeling are totally normal, you've lost a dream, of the perfect pregnancy, delivery and healthy baby, and it's ok to mourn that, and ok to mourn the should have beens. Huge huge hugs.
Stacy
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esgf
- Jan 9, 2012 1:39 pm
(#21 Total: 21)
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Abigail's Mom (29 weeks, 3/21/05) |
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I hope today is better than yesterday and the day before than that. The unexpected days are the ones that catch us off guard but we all still have them. Somedays seeing a maternity store makes me sad and it has been almost 7 years. More than not now I am okay but it is the unpredictability that is almost worse.
I hope today is a good day.
Ellen
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